Playing in the kitchen...

So much for ... well ... I'm not going to mention that again.  If I do capture the missing memories, I do.  If not ... ARGH!

It has been an incredibly tough week.  Friday night, just about at the end of my rope, I jumped in the car to use my Menard's rebate to get a replacement squeaky bone for Amos (his new love that has caused him to leave all other loves in the dust) and some summer sausage for me (my childhood love).

This is what happens if you are drowning in upsettedness, have no one to talk to, and find yourself at Menard's.  Those are butter toffee peanuts, if you are wondering.

It helped to do some retail therapy, even though this is the worst possible time to do that.  The absolute worst.  But that's another catch-up post.  I then came home, still upset, turned on Adele, and played in the kitchen.

Someone mentioned a yogurt turmeric marinade to use on a whole turkey breast.  I thought that sounded tasty and worked out how you could use it on boneless, skinless chicken breast.  I bought the ingredients, thawed some chicken, and experimented.

The marinade I created is comprised of whole milk Greek yogurt, lemon juice, minced ginger, garlic, and onion, turmeric, cinnamon, coriander, sea salt, cayenne, and peppercorn medley.   I put the two chicken breasts in a larger bowl, made sure they were thoroughly coated, with no chicken peaking through, cover them with plastic wrap, and stuck them in the refrigerator for 24 hours.

I didn't eat all day and didn't even think about it with all that contraband that I bought.  I did, later on, think about just stopping eating all together.  Maybe I'll just fade away.  Hunger is yet another thing that I have lost through illness.  It is a very, very rare day when I am actually hungry.  The hunger didn't leave with dysautonomia, per se, but with the theophylline.  Hunger ceased on that medication and when I stopped taking it after getting the pacemaker, the hunger never returned.

Sometimes, I think I've been hungry, but it might be more accurate to say that I have been a tiny bit peckish.  Sometimes, I graze, again not of hunger, but of wanting a distraction from what is going on in my head or to pass the time.  It is a weird existence ... especially when doctor's ask me about my appetite all the time.  Well, no, because there is no need to satisfy hunger with this body of mine!   

Of course, spending so very many hours nauseated, eating tasty food has become a passion of mine.  Almost as if eating something savory or sweet, something that lingers on the tongue and mind, is a way of thumbing my nose at the nausea.  So, I really didn't cease eating.

I do think about that often these days.

Instead, Friday I worked on the marinade and Saturday I tried the first of the two cooking methods I wanted to explore with the marinated meat.

Holy Moly!  This was so darned moist I am still shocked!  I read up on roasting chicken and found a cook who said that the longer chicken is in the oven, the more it dries out.  So, naturally, we should be cooking chicken at higher temperatures for shorter times.  I roasted this at 450 degrees, and then broiled it for a few minutes to finish browning the marinade.

It has a thick coating of flavor.  I sliced it in thick slabs and then cut those in thirds.  Each bite had enough marinade to satisfy the desire for flavor.  And every bite was so moist I had to stop and marvel!  I ate half with the broccoli, a quarter cold from the refrigerator, and a quarter reheated with saffron rice.  I was especially glad to see the cold chicken was still tasty.  I do love me some leftover meat straight from the refrigerator.

Since I planned to use the skewers, Saturday night I took the chicken out of the marinade, cubed it, and then returned it to marinade.  Oh, my!  Marinating for 48 hours!   Tonight, I roasted the chicken on skewers.  Mmmm!  I still think that, next time, I will roast it both ways since it is just me here, but maybe not.  The cubed meat would be easier to freeze.

Gosh!  This really is an impressive marinade!

I ate half the meat with my beloved grilled ginger mustard summer squash.  Mmmm!  I am thinking about having the other half with either Lebanese rice pilaf or flatbread, either naan or gyro.  Or, of course, I could just eat it straight from the glass storage container!

Lots to consider.  Perhaps you could try the Turmeric Roasted Chicken and tell me the best way to eat it!

[Backdated to capture missed memories.]

I don't want to just keep missing things.  Of course, I keep trying to write.  Like just now.  An hour went by as I battled what happened today, which I want to capture.  Crap.

Last Tuesday, I had a mammogram ... the third  time I made the appointment.  I wasn't going to go.  The last time ... the last time still triggers me.  I understand better, now, about why it was so awful for me, without even talking about it in therapy yet!

For one, my therapist has spoken about how going through experiences like that are trauma for me.  New trauma and old mixed together.  It doesn't matter that it is a medical procedure.  For one like me, it is trauma.  I haven't really processed that yet.  Actually, I am struggling to understand what it means to process something.  But I have heard it.  Hearing has not be my strong suit for a very long time.

To note one other thing ... there were two techs and both were touching me.  Just remembering that ... [shudder] ... I cannot go where that takes me.

I did so very many things right this time round.  And I can hear that without shying away from it or dismissing it.  I worked to make it better.

• I had comfortable clothing to wear instead of a gown.
• I had a photo of Amos to look at.
• I had an advocate talk with the tech ahead of time.
• I was able to identify what the tech could do to help me.
• I asked for that help.
• I had friends stay on the phone with me whilst driving.
• I planned for it to be just before therapy.
• I saved the last of my wood for a fire.

I didn't really ask my friends ahead of time to help me.  I mean, the whole world knew about my appointment, but I am not sure anyone was paying attention to my shoutings.  [I really don't use Facebook the way that I'm supposed to do so.]  But I called Mary on the drive between the imaging facility and Becky on the drive between therapy and my home, knowing my realtor would soon be there to distract me.

She was a great blessing to me, for Leslie really wouldn't take "no" for an answer.  She wanted to go with me and I didn't want her to see me the way that I was the last mammogram.  I knew it was a different facility and it would be with a different technician, but still.  Still.

But it snowed four inches and Leslie's day opened up and she just ... didn't accept my "I'll be fine."  And she came up with the best idea ... I go to therapy and she goes to COSTCO for pizza.  And she din't just bring me a slice like last time she went there ... no, she brought me an entire pizza!  Mmmmm!

But the best thing I did was to schedule the mammogram before my therapy appointment.  By doing so, it put me in a safe place where I could ... experience the flashbacks.

I wanted my therapist to make them stop.  I wanted her to ... well ... something.  But she didn't.  She talked with me.  Well, she let me talk.  And talk.  And talk.  I was trying to keep the flashbacks at bay.  And I ended up talking about cooking.

I'd get lost in what I've learned and what I've cooked and what I thought she'd like to try and then ... someone make it stop ... the trembling would worsen, I could feel hands, the fear, the shame, the pain returned ... then she would ask me a question, get me talking about my bliss once more, the only area in my life that has moved forward in the past few years.  

I learned that she was trying to keep me in the present, because that is the way to get through such a storm.  I learned something without ...  well ... I learned something by experiencing it in such a natural and authentic manner that I understood it when she explained the goal afterwards.   Or near the end of my session.  When I was ... easier ... with what was happening.

What I love best about my therapist is that she was a nurse for many, many years.  When I started getting lost in my past, she explained that what was happening was real.  That what I experience now was triggering the emotions from then stored in my brain.  She explained that what was happening in my body was biological, not just some sort of crazy that needs to be medicated away.  Or shushed.

This is the first time that I understood what is meant about moving through the flashbacks.  And my therapist also explained that by talking about things that clearly made me happy ... content ... that I was, in a sense, overwriting those distressing emotions, lightening their burden a little bit by little bit until they no longer hold sway over me.  

I cannot say as I would like to experience what I was experiencing again, but I know that I will.  If nothing else, I have a pelvic exam next October.  SHUDDER.  I am wanting ... very much ... to have my burden lessoned.  And so I show up every Tuesday when my fear would otherwise keep me firmly behind my closed and locked doors.

Amos!  Oh, how my beloved Fluffernutter rose to the occasion.  Once I started to descend into darkness, in a place no one can follow, Amos was there, abandoning his weekly exploration of my therapist's office to leap up into my lap so I could bury my face in his curls as he pressed himself against my chest.  I wouldn't have gotten through that session without him.  I remain in awe that my Good Shepherd has provided a therapist who is bearing almost the full cost of my sessions and who allows Amos to tend to his puppy momma in her distress.  It's almost unbelievable.  

At least, to me it is.

[So, this back-dated rememberer entry took over 13 hours to write.  Once, it would have taken an hour, if that. How am I going to catch up??]   

A new danger...

I shouldn't have been so worried about how my GP was going to receive my request to cease the latest nerve pain medication.  She said she was impressed I stuck with it as long as I did.  She also surprised me with how quickly she believes that I can get off of it, given that duloxetine has a terrible reputation for withdrawal.  Tomorrow, I take one last dose of 60 mg and Sunday switch back down to 30 mg already!  She believes that if I do get withdrawal symptoms, such as the brain zaps, they should not last too long since I have been on the medication for such a short time ... though it has felt like a lifetime to me.

The distressing news is that the neurogenic flushing has now officially caused rosacea.  Fun times.  My main concern is that, on the left side, where it is worse, I am now experiencing ocular rosacea.  My poor, beleaguered eyes do not need any further dryness!  So, I am a bit frantic to find something to help before the ocular rosacea worsens.  Sadly, there is little to be done, although I found a few studies of neurogenic rosacea, a new fifth subset of rosacea, that suggest an off-label use of an OTC drug.  I am interesting in trying that.  Although, tell me, how would one go about applying a nasal spray topically??????

Now that it is not merely my skin, but further danger to one of my eyes?  Well, I have started asking my GP to move this to the top of the agenda instead of languishing at the bottom.  It is one of those thing that just has to be so darned complex and out of the purview of most doctors.  Normally, you would see a dermatologist and work on triggers.  But, with neurogenic rosacea, the triggers are within my faulty autonomic systems.  And, with the skin of the face, you have the sympathetic, parasympathetic, and sensory systems all at play.

I am galvanized about putting my research skills to work to see what I can find.  After an initial search, I have four good articles to start, though one of them is so technical that I can only understand a small fraction of the text.  Once I have a goodly collection, I plant to give an annotated bibliography of them to my GP.  She also has a doctor friend who is currently in India but who might be informed on possible treatment for ocular rosacea.

I have to admit, it crushes me to have what I now consider a clown face.  When I flush on the left side, there is a large letter C on my face, or maybe better put a tilted letter U.  So there is this gap in the center and on one side where my skin is the pale tone that I have had my entire life.  When I am not flushing, I still have redness on both cheeks and on the bottom of the left side of my face.  I very much dislike looking in the mirror these days because I no longer recognize myself.  And I am stunned at just how much my skin has become damaged in the past few months.

SIGH.

Midnight comfort...

There are so very many days where all I accomplish is getting up, feeding Amos, walking on the treadmill, feeding myself, and napping.  It still boggles my mind that great chunks of time can pass without my streaming or reading.  More and more, I find myself just ... resting ... from whatever arduous task I have done, such as get out of bed.  SIGH.

One of the side effects of the third nerve pain medication is excessive sweating from the head and face.  It is ... gross ... to me.  But it has also be a bit of an encouragement in this strange sort of way.  You see, I sweat when something is difficult for me to do, such as walking on the treadmill.  But the treadmill is not the only arduous task I face in a day.  It tickles me, in a way, that I find myself drenched after getting out of bed and dressing myself.  I have to wrap a towel around my shoulders to keep my clothing from becoming sopping wet and have to wait on any powder or mascara (about the only make-up I wear anymore) until I can wash my face after I finally stop sweating.  Why does it tickle me?  Well, I now have objective proof that getting up and getting ready is difficult for me!

The same is true for standing.  The longer I stand still, the harder it is for me to remain upright.  It is one of the chief reasons why cooking is so very difficult for me.  Yes, I get confused following the recipes.  Yes, I miss-measure quite a bit.  Yes, I even forget that I am cooking and end up burning things.  However, I also start sweating up a storm from the strain of standing.  I would do that even before I started this medication, which is why I was so very blessed when my sister bought me a fan for the kitchen.  However, now, I could fill up a kiddy pool with the sweat pouring off of me whilst I cook.  Sweating and cooking do not go well together, which is the main reason I haven't done much of that of late.  That and the whole IDON'TCARE side effect.  SIGH.

I am very, very,  very nervous about my GP appointment on the morrow, even though I am continually amazed at what a wonderful doctor she is to and for me.  I believe I have a very strong case to cease the duloxetine and it was my idea to try it in the first place.  However, I do trust her and if she wants me to continue taking it, even after I present my case, I would be hard pressed not to acquiesce to her request.

I am rather nervous about getting off of the medication, for like three other medications I am on, I have to be weaned off of it.  I have been battling wretched headache since going back to 60 mg after having been on 90 mg for 10 days or so, but the change was not as bad as I worried it might be.  I am most worried about going back down to 30 and then off if it from there.  The medication are capsules with little beads in them and some folk, when going off the medication, count out the beads to gradually decrease the medication because withdrawal can be so very brutal.  I am hoping it is not that way for me since I have only been on it for a little over two months.

Anyway, today i did a bit more:  I tortured myself on the treadmill, did my hand weights exercises and squats, reconciled two months of my bank register, paid bills, filed paperwork, took out the trash and the recycling and put the bins out in the alley, cleaned the stove, gave Amos his monthly heart worm pill, watered the plants in the solarium, scrubbed the tub, shaved the callouses on my feet, showered, and lit a fire. Oh, yes, I also fervently hoped the glop will soon start working. Day 17 of stalled innards.  SIGH.

I tended my feet because tomorrow my GP will be examining them.  To me, not having cracked heals and callouses is like not wearing dirty underwear to the doctor.  I have an ancient pedegg and this weird sort of emery board for feet.  I shave with the pedegg and then smooth with the emery board.  I used to then also use a peppermint foot scrub and finish off with peppermint lotion, but I just washed my feet in the shower as I would normally.  And I put on plain lotion, though I would have preferred the peppermint.

It is weird tending to my feet now because I get wigged out over them.  You see, if not in wool socks, they turn blue.  Even in the shower, my feet get cold.  I keep thinking about putting the plug in the tub when I shower so the warm water builds up, but I never remember when I am actually in there. Anyhow, it is just plain disconcerting to be working on your feet and watching them turn blue and feeling your fingers and hands grow cold from the icy skin of your feet.  Essentially, the Reynaud's is much worse.

Sometimes, on the treadmill, my feet turn into blocks of ice and it makes it difficult for me to walk.  My wool socks are too thick to wear in my shoes.  You would think that half killing myself on the treadmill would keep my feet warm, but it doesn't.  If I were still working and had disposable income, I would regularly buy those foot warmer pad thingamajigs that hunters and folk going to football games in winter use.  The struggle to keep my feet warm is yet another one of the daily battles I must face and which wearies me.  SIGH.

The glop hasn't worked yet, so I am in need of a bit of midnight comfort.  Tonight, I decided that would be a Dr Pepper.  Surely Dr Pepper will help things start moving along, eh?  Dr Pepper and a section of Panera French bread.  I received a gift card to there at Christmas.  Ever since I figured out how to keep French bread fresh in the freezer—I divide it into six portions, wrap each up in plastic wrap, and then put all the portions in a gallon ziploc bag—I added French bread to my meal rotation. Sixteen seconds in the microwave will thaw the bread, but not cook it, so you can still tear into it with great satisfaction.  I like eating it with a slab of extra sharp cheddar cheese.  Doesn't midnight Dr Pepper, French bread, and cheddar cheese sound like just the trick to finally turn the tide on seemingly never-ending constipation?

Seriously, I am beginning to resent Amos' ability to leave deposits out in the back yard three times a day.  At this rate, I would settle for three times a week.  Living with croci illness stinks.  SIGH.

Uncle

Trying to take the third nerve pain medication has been terribly arduous for me and I am crying "Uncle" at my GP appointment on Friday.

To be indelicate, I have not pooped since I started the 90 mg dose on the 16th of January.  Monday, I messaged my GP and switched back to 60 mg.  It is my hope that dropping back to the previous dose will help the constipation.  My most fervent hope.

I found this constipation recipe from a pharmacist: 1 cup applesauce, 1 cup coarse, unprocessed bran, and 3/4 cup prune juice. Mix all the ingredients together. They will turn into a pasty, stiff glop about the consistency of peanut butter. After mixing, it should be kept refrigerated. Take one or two tablespoons daily and wash it down with a full eight ounces of water.  

I made the glop tonight and took one tablespoon.  ICK!  I added a generous measure of honey before taking the second tablespoon.  Better.  I hope it helps.  Fervently.
The reason I am crying "Uncle" is not just the constipation, but primarily because of the clenching (which I've learned is muscle spasms), which is, in turn, causing multiple Trigeminal Neuralgia flares every day.  And the increased sicca.  Life is brutal at the moment.

My therapist, who was a nurse for 20 years, believes the new medication is causing the increase in Sicca Syndrome (what causes the severe dryness that comes with having Sjögren's Syndrome).  My eyes, throat, and sinuses are terrible, as if I am not taking any of the medications I am using currently.  And my lips are cracking, too.  I put in eye drops or gels every hour.  I rotate nasal spray, nasal emollient, and nasal gel every two hours.  I put lip balm on every two hours.  And I take olive oil three times a day, trace minerals, three times a day, have more than doubled what I drink (now over 100 ounces), and have doubled the hyaluronic acid to try and address my desert dry throat.  All this and I am taking my other medications eight times a day.  It's exhausting just trying to make my daily existence manageable.

In the past few days, my eyes have gotten so bad that I am having trouble sleeping.  They are as bad as they were before starting Restasis and all the other eye drops and gels.  And my vision is so very blurry that I can no longer drive at night.  Along with the other increased dryness, the medication side effects, and the normal symptoms I battle daily, my bodily misery has escalated beyond what I can endure.  SIGH.

Uncle

Sicca...

One of the things that has been difficult to endure of late, aside from the attack of the Trigeminal Neuralgia, is the sicca syndrome that companion to Sjögren's Syndrome.  It is possible to have sicca syndrome without having Sjögren's, but sicca is usually the presenting set of symptoms with Sjögren's.  It is the excessive dryness of tissue:  skin, eyes, lips, mouth, throat, sinuses, and private areas.  Generally, you hear about the eyes and the mouth.

I am rather thankful that I do not have a severe dry mouth.  Mine is dry, but the go-to help of Biotine works for me.  However, as I have written before, I have dry eyes, a dry throat, and dry sinuses.  And, well, dry lips, but I am ignoring those in light of the Big Three that are plaguing me.  The thing is, that which I have been doing to manage those symptoms are no longer working for me.  I mean, they are working, but no longer well enough.

I wrote about my eyes, about the specialist discussing cauterizing closed my tear ducts as a next step if the drops-every-hour doesn't start moving the needle for my beleaguered corneas.  With my throat and my sinuses, the dryness is worsening as well.

With my sinuses, there are more things that I can try.  The nasal emollient helped and is still helping because it shoots up rather high.  But I am back to bleeding and large scabs every day.  I just started using nasal gel and have some nasal mist on the way to see if I can get more moisture up my nose!  I snort the steam in the shower and use saline spray every day.  And I have the house humidifier set higher.  I still haven't gotten the hang of using the nasal gel.  I suppose there might be a You-Tube video for that, but I haven't looked.  I am quite skilled at sticking gel in my eyes, which I've always been squeamish about when it came to my contacts.  I'm hoping I figure out the secret to using the nasal gel.  I am not concerned about the nasal mist when it arrives.  I am the Queen of Snorting these days.  SIGH.

The problem with the dry throat is that there is very, very, very little to do.  There are no medications and no over-the-counter products for dry throat ... at least not the actual throat as opposed to the back of your mouth.  The dryness is so very bad now that sleeping—and not drinking—means that I start coughing and gasping.  I'm trying to drink whenever I get up to fetch fresh ice packs.  And I am using Chloroseptic, Cepacol, and the Tesselon Pearls.

It is hard to get the throat spray far enough down my throat to work since you have to let it sit on the tissue a bit to get the numbing factor started.  I've been hanging my head backwards off the bed trying to swish the Chloroseptic around my throat without swallowing it.  It's the same with the Cepacol lozenges.  I try to suck on them at the very back of my throat without choking.  And, lately, I have been trying to let the Tesselon Pearls dissolve at the back of my throat before swallowing them.  It's a tricky thing because the numbing factor is severe with that drug.  Sometimes it interferes with my ability to swallow and I end up choking on my saliva when trying to sleep.

The coughing and gasping are so very despairing.  When I am trying to sleep, it is because the nausea or the chills or the writhing or the blood sugar or the blood pressure or some other part of me is not malfunctioning and I can actually get some sleep.  The fact that I struggle so very much to sleep ... I just sort of lose any sense of equanimity and sensibility and ... and ... hope.

It's a bit wild and a whole lot frustrating to have such a dry throat and down a few dozen ounces of water and gatorade and have your throat be just as dry when you are finished.  Currently, I am also trying the use of honey to coat my throat.  Thankfully, my friend Emily sent me some local honey as part of the most lovely Christmas package she sent.  I am not seeing a significant result yet, but I do like the taste!

On Wednesday, I see the Integrative Medicine Specialist and am most fervently hoping that she will have an idea of something to try.  I am going to ask if the two weird OTC meds I am taking can be increased.  Most particularly, I am wondering about the hyaluronic acid, since I am taking it once a day.  She also mentioned trying trace minerals, so I thought we could see if she still thought there might be a chance of that helping.

The problem is that I am taking four different eye drops in addition to the Restasis and now four different nasal meds and four different meds for the chronic constipation that the new nerve pain medication is making worse, as well as a dozen other over-the-counter medications and supplements, such as the high EPA fish oil for my beleaguered eyes.  All of that adds up something terrible and yet nothing that I am taking is expendable.  I know, for I have already eliminated what I could.  The last time I crunched the numbers, I was spending over $200 a month on over-the-counter meds just to try and keep up with my symptoms.

This dry throat thing ... well ... I give anything if there was something I could take to bring it back to a manageable state.  Anything at all.

So many people with Sjögren's end up with dentures because our teeth need saliva to remain healthy and in our mouths.  I want my teeth to stay right where they are.  That's why I am assiduous about using the Biotine even though my mouth is not miserable dry the way my sinuses, throat, and eyes are.  I wonder, sometimes, if the tissue in my throat can become damaged the way my corneas are being affected, the way gums and teeth are.  I wonder the same about my sinuses.  SIGH.

Sometimes, I want to lie on the floor, flailing my arms and legs, and scream how unfair it is to get Sjögren's on top of Dysautonomia.  Sometimes, I want someone to sit beside me and hold my hand and whisper how unfair it is to get Sjögren's on top of Dysautonomia.

I think it is easier to talk about how chronic pain is isolating, because dealing with pain on a daily basis changes you as a person and few, if any, of the people in your life can understand the battle ... and the loneliness.  But I believe that living with chronic illness and having to manage symptoms and mediations and medical appointments and insurance and bills day in and day out is just as isolating, even if you are blessed not to battle pain.  You find yourself trapped in a different world, out of step with everyone else.  As much as you want to rejoin the world in which you were living before your body began to fail, you cannot.

My sister told me, a while ago, that she thought it would be better if I stopped trying to talk about specific medications or use medical terms when I am interacting with others.  She said that she found herself tuning me out because she couldn't follow what I was saying.  "Nerve pain medication" is better than saying gabapentin, baclofen, or duloxetine.  People can understand and create a frame of reference for nerve pain medication, but they cannot for the specific medications.  What she didn't say is that she realized I was trying to be less alone with what is happening to me, but my attempts to get someone interested in my medications and symptoms and tests and treatments had the effect of ... well ... pushing folk away.  It was hard to hear her words, but I do not think she is wrong.

My dear, dear friend Rebecca Anne Bettina Matilda Boyles Kulp is trying to learn what she can, but she has a life with a husband and children and a new job.  It takes most of my days just trying to stay on top of my medical life.  How can I expect or even want someone to try and take in the massive change to my life when that person would only have bits and pieces of time here and there?  It is too much to ask ... or desire.  SIGH.

Yet I do desire that.
And I continue to try to explain.

I do not think that I will ever be able really describe what my battle with pain is like.

Or my cold spells.
Or my dry throat.

How can I get you to understand how sicca can drive a person to despair?  How can I show the misery of body and mind and spirit that festers in the deserts of my body?

"Sicca" is a word that I long for you to learn and it is a word that I wish I had never heard.

What life has become...

Yesterday, I had four flares of Trigeminal Neuralgia.  Today, I had three.  SIGH.

Never have I had so many attacks in a single day, much less a week.  At least, never until now.  I've been enduring the brutal attacks frequently ever since I started the new nerve pain medication.  I think that this is because one of the side effects I have been battling is clenching my teeth shut.

It is the weirdest thing for me to find myself clamping my jaws together as if my life depended on it.  I work and work and work to try and relax my jaws and hold my teeth slightly apart, but when my attention wanders—and when I am asleep—I discover that my teeth are clenched tightly once more.  As a result, I have also been enduring constant headaches.  With my crap kidneys, I can no longer take the medicine that always knocks out my headaches.  And I suspect the clenching of my jaws is what is triggering the Trigeminal Neuralgia.

I saw this a while ago and loved it.  Mostly, because I still cannot quite believe that my life has become a life of pain.  I struggle with multiple types of pain.  I take four different pain meds.  I've spent part of every doctor visit for the past two years discussing pain.  I talk about it most weeks in therapy.  And my life has become incredibly isolated as I struggle to live with chronic pain.  It is hard to hide my deep despair.

To be honest, I do not believe that even my dearest friend understand just how brutal Trigeminal Neuralgia is.  Even when I say that it is known as the Suicide Illness because so many sufferers cannot bear to live with it.

• Arthritis pain
• Trigeminal Neuralgia
• Pudendal Neuralgia
• Occipital Neuralgia
• Peripheral Neuropathy
• Visceral Neuropathy
• Small Fiber Neuropathy
• Shocking in my hands
• Migraines
• Chronic headaches

I find it rather defeating that, I am assuming, medication for one type of pain is causing another type of pain.  Resolutely, I started the second increase in dosage on Friday, in the hopes that, eventually, the constant shocking in my hands that I have endured for 94 days now might end.  I have a month at this dose and then one more increase to get to the therapeutic dosage my GP is hoping will help.  But will increasing the dose increase the clenching and increase the Trigeminal Neuralgia flares?

Living in fear of the next attack is not living.
It's surviving.

The good news is that the emotional numbness and the I DON'T CARE side effects have eased a bit.  I no longer feel so trapped in my own body.  I think, because of that, I had more confidence in going from 60 mg to 90 mg than I did from 30 mg to 60 mg, which I did with much fear and trepidation.  But the side effects that remain are troubling.

I do not merely clench my teeth.  I sometimes find different parts of me clenched.  My hands.  My arms.  My body.  As if I am bracing for some mighty blow.  When I realize what I am doing, I force whatever part of me it is to relax.  Over and over and over again.  SIGH.

And there is the pain.
Always present.
Singular or plural.

A life of chronic pain is like trying to get comfortable on a cactus sofa.  You keep trying because you have no choice.

The heart guy...

Today's cardiology appointment was my BEST EVER, mostly because I got the BEST NEWS that I could hear at this time from him:

My pacemaker is MRI capable!  The issue is not the pacemaker.  It is with the FDA, who stepped in to monitor devices in MRIs.  The associations for cardiologists and for radiology say the device is safe.  The central data clearinghouse medsafe says that the device is safe.  Folk with the device are getting MRIs in Europe.  Yet the FDA needs more information.  SIGH.

Still, there is a workaround.  It is a long and involved process that my cardiologist has to do that involves seeing a waiver and arranging for a programmer to be on hand and personally taking responsibility for any damage to the pacemaker.  If I decide that the MRI is necessary, he will go through the process for me.

I am absolutely, utterly relieved about that.

At my GP's visit, I learned that 60 mg was not the therapeutic dosage goal for the new nerve pain medication.  She would like to get me to 120 mg before making a decision about whether or not it will help me.  I'd need at least two months at that level.  So, on the morrow, I will be moving up to 90 mg for the next three to four weeks.  So, the plan is that, after two months at 120 mg, if I do not have adequate relief for the constant shocking in my hands—Day 91 of that particular misery now—then my cardiologist will start the process so that I can have an MRI.

Originally, she was going to do an MRI of my head and cervical spine, but I am going to ask her to go ahead and do an MRI of my entire spine and possibly my lungs, since we wouldn't want my cardiologist to have to go through his song and dance more than once.  I do fear that, after all of that, the MRI would not show any further changes in my brain, but I know that it would be needful, at that point, to rule other things out before concentrating on simply trying to calm down my blasted nerves.

That news alone would have made the visit worthwhile, but I was able to talk through several other matters.  One of the best moments—aside from my blessed pacemaker news—is that I was able to think of a way to describe the palpitations I have been having: it feels like my pacemaker is in test mode.  He knew exactly what I meant and told me that I was feeling PVCs.  That is something that he can track on my pacemaker to see if I am having more (which it feels like to me) or if I am merely noticing them more.

We talked about the daily torture I am doing, and he gave me something to try since I've abandoned the recumbent bike again.  Once the plantar fasciitis and then the tendonitis were resolved, I kept up the bike by rotating between a day of walking, a day of biking, and a day of half-and-half.  Only the biking hurts my thighs so much I finally decided a couple of weeks ago that I was going to just walk.

I also started back with using my free weights with my arms and shoulders.  In addition, I have been working on my calf muscles and trying to work on my thighs.  I tried to do lunges, but kept falling over.  I need a walker for that.  I've been doing squats, but I have worried they wouldn't count since I cannot go down very low because of my crappy knees.  I have thought about buying sleeves for them, but I am not sure the investment would been a good one for me.  And I just started back on some backwards leg lifts the physical therapist suggested I do.  [It is embarrassing to admit, but she believes that working on my backside muscles would be very, very good for me.]

Always, my cardiologist asked me to considering doing stair steps.  I was a bit ... well, I repeated for the dozenth time that stairs are hard for me.  But he was saying to use the steps of my stairs the way folk do in a gym.  Up and down on two steps, holding onto the handrail.  I thought that was a good idea to try.

At this point in the visit, my cardiologist told me that he thought I was doing a very good job taking care of myself and was clearly doing the best that I could.  Maybe not the best, but I would go with the good job.  After all, I am not a big veggie eater.

My cardiologist also said the most lovely thing today: "I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

He totally gets life with Dysautonomia!

It was following talk about the MRI (and my comment that it would probably be normal) and also about the echocardiogram he offered after my last appointment in a message to me.  It was an offer that I took a bit ... hard ... and waited to respond to until I saw him again.  The nurse wrote the email back to me, so it could have been her words or it could have been that I was upset after my last appointment.  In any case, I read it as ... if you really insist on being tested for something we can do this.

That's not what he meant.
Which I knew.
I just couldn't hear what he meant then.

My cardiologist, when I said what my plan was about the MRI, responded that it was a good plan.  That warmed the cockles of my heart.  After all, you know I sure do LOVE ME a plan.

When we were talking about the echocardiogram, he brought up the MRI plan again as being a good one and then said he felt we were on a good plan for watching out to be sure that the symptoms of Dysautonomia do not mask any symptoms of heart disease, given my concern about my family history.  I see him every three months; I talk about the symptoms I am having that worry me—such as the chest pain I get when my heart rate tops 130 or the palpitations I described this time—he listens closely and repeats back to me what I am saying to be sure he understands; and then he considers the possibly causes of what I am experiencing.  Thus far, he is confident everything is Dysautonomia-related, other than I now have a lazy heart.

However, my cardiologist said that I am the one living in my body and so if I tell him that I am just not sure about something, he is happy to follow up my concern with testing.  Then he made that most lovely and caring and compassionate of statements:

"I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

I got a bazillion "likes" when I posted it in the Neurocardiogenic Syncope (NCS) support group on Facebook.  Lots of congratulations on having such a fantastic doctor and lots of jealousy wanting the same.  I find it interesting that in the general Dysautonomia group, which is mostly Postural Orthostatic Tachycardia Syndrome (POTS) folk, there was not as much love.  I have had a lot of negative interactions with POTS folk and have noted they are more of a test-happy group.

I've read oodles of posts about having a second, third, fourth, and even fifth Tilt Table Test.  That is a very dangerous and quite awful test.  I would never go through it a second time.  But I see folk traveling from one doctor to the next, one specialty clinic to the next either wanting a cause or a cure or both.

Dysautonomia is incurable and its cause is primarily merely a good guess.  Some women get POTS after pregnancy, but why that happens is unknown since pregnancy itself is not a cause given there are a bazillion pregnancies each year and not a bazillion new POTS patients.

I do understand the desire to be better, but those of us are not going to get better.  We can have better management of our symptoms, but even then that can be tenuous at best.  I was making headway on the dryness in my throat and my sinuses, but what worked for me before is no longer effective.  And the Restasis is barely holding ground in the battle of dryness in my eyes.

Pursuing a cure will only lead to a troubled bank account and a troubled spirit.

NCSers tend to be more pragmatic about posts, asking about doctors and meds and symptoms.  And they are less strident about folk all being on the same page when issues are raised.  So, I was not surprised at all that there was an outpouring of emotion in the NCS group about my cardiologist's view about testing and just a sniff of that in the POTS group.  I am just thankful I had a place to share that loveliest of comments with folk who would understand its beauty and comfort.

But back to the visit, I will also note that I was able, whilst discussing the echocardiogram offer, to tell my cardiologist that I was triggered during my last appointment.  I told him that I didn't understand what was happening until my therapist pointed out that I had had a flashback.  It was a different sort of flashback than I had had before and didn't recognize it as such.  After she pointed that out to me and that news sank in for a few hours, I was able to see that my thoughts during my upsettedness were not based on what had happened now, but what had happened then.  I didn't tell him what triggered me or what I was thinking, but I was glad to be able to talk about that briefly.

I forgot to tell him that I should get brownie points for not sending him an upset response to the echocardiogram offer or after I was told the less than accurate news about my pacemaker not being MRI-compatable.  It is.  The FDA just hasn't recognized that fact yet.  Oh, the heartache that could have been avoided had the nurse from the pacemaker clinic just have explained that to me!

Well, I'm sure that I am forgetting something about my appointment, but you get the gist of it:  GOOD NEWS and good communicating.  This was my best cardiology appointment thus far, and it leaves me rather hopeful about future appointments.

Just how giddy was I about the pacemaker news?  I scheduled Attempt #2 at having an MRI.  I am going on Tuesday, just before my therapy appointment.  It is my hope that I go through with it so that I have a safe place to go afterwards.  SIGH.

Should I mention that I got COSTCO pizza on the way home??????????

a long day...

Today was to be another snowmageddon, but it never materialized.  Going with how I am struggling and my GP's permission to delay the mammogram, I called and canceled it.  Staying home from that was an enormous relief.

My GP appointment yesterday was rather productive, if discouraging for me.  The main thing I avoided discussing in depth was the whole problem of the chest CT showing a finding of interstitial lung disease.  In short, my GP wanted to talk with me first before consulting with the rheumatologist about treatment.  She also wrote a referral to a pulmonologist.  The soonest available appointment is in April.

The best part of the appointment, even though it made me feel like a blooming idiot was when we were discussing the dry coughing fits I am having, primarily in the morning when I am trying to sleep.  I know it is not my asthma and I am fairly certain it is not sinus drainage because my sinuses are severely dry from Sjögren's Syndrome.  I felt like a failure for not being able to manage the problem and I have been quite despairing about it.  I sort of lose it when I could be sleeping (i.e., the nausea has abated) but cannot because of the coughing.  Well, my GP pointed out that I have severe dryness in my throat and by the morning, it is most dry since I do not hydrate in my sleep.  Lightbulb.  Ohhhhhhhhh! Yes!

It is like my eyes. Because I no longer had to use hot compresses just to get through the day, I thought the dryness in my eyes was better. It is and it isn't. Learning that it isn't at my eye appointment last week was a bit devastating.  I am not feeling all that positive about having my tear ducts cauterized closed. 

Because I have been so much better at swallowing my pills, I thought the dryness in my throat was better. It is and it isn't. And, by golly, in the early morning to noonish when I'm trying to get some better sleep in, the dryness has me coughing up a storm. I was quite despairing about it when the tesselon pearls, chloroseptic, and cepacol all started to fall short and the coughing grew worse. But now that I know that my problem is dryness I can try to work the problem with that in mind.

Last night, I drank more before bed and drank a little bit every time I got out of bed to fetch fresh ice packs.  Before the integrative medicine specialist started me on n-actyl glucosamine and hyaluronic acid for the dryness, my GP has me trying carafate, dissolved into a slurry, to see if I can coat my throat.  It is the weirdest and most frustrating thing to have the driest of throats and have water quench the agony not at all.  The problem is needing your body hydrate the tissue from the inside out and having your body give up that process.

Buy, my goodness, why didn't I figure this out?????

Yesterday, I was grumpy and tired, having already done too much before seeing my most amazing doctor.  I had been to the orthodontist to have the broken retainer removed, to Best Buy to drop off my broken television for recycling, to the pharmacy, and to Walmart for groceries.  And, of course, having my hands shock me for 84 days at that point, going nuts dealing with that pain just makes everything worse.  Mostly, though, I have been felled by both my parents rejection when I asked for help with my medical expenses and the bad news about my lungs and eyes.  

I do want to think of something I can do next month to thank my doctor for being gracious about my grumpiness.  SIGH.

After the end of my 90-minute appointment, I walked outside and was shocked at how pitch dark it was.  And it was raining.  It was a bad day for my vision and, having started my journey home, became rather frightened about making it there safely.  I called my sister then Becky and then my  friend Mary trying to find someone to help me.  With six children at dinnertime, I thought it was a bit selfish of me to ask her for help, but I did.  But she, in a beautiful act of mercy, did help, staying with me on the phone as I drove through the rain, struggling to see the street signs and battling fear the entire way.

It was a long and trying day.  But I had the problem with my broken retainer resolved, I no longer have a television riding around in the back of my Highlander, I have milk milk enough to last through any snow in the next two weeks, I am ready to fill my two-week medication holders on Sunday, and I was blessed both by the care of my doctor and my very dear friend.  So, I am working on viewing it as a good day.

Is it even possible for any day you stock up on milk to be a truly bad day??

A small victory...

It is weird.  For the first time in 35 years, I can feel the back side of the front six bottom teeth.  I can do so because I had to spend $50 getting the broken permanent retainer removed.  I had the worst time trying to be civil to the woman who was tending to me because: 1) she talked so much, asking me dozens of questions and stopped working for her chatting and 2) she COUGHED ON ME the entire time she was working.  I fully expect to come down with germs in the next few days.  SIGH.

The other day my sister mentioned that her doctor once talked about our wandering tongues.  I just LOVE that phrase.  What he meant is that when there is something going on in our mouths our tongues just cannot seem to leave it alone.  My poor tongue has several wounds on it from wondering about and wandering all over the broken retainer until I could get it removed.  And, now that it is gone, my tongue cannot seem to leave those teeth alone!

The woman working on me commented on how good the back side of my teeth looked, something I attribute to using that wretched-tasting baking soda toothpaste.  But no matter how much I worked on brushing and dental-picking around the bar, when it was removed, I was left with quite a bit of plaque in a line above and below the bar on the back side of my teeth.  The teeth with the two ends cemented on them were cleaned off, but the four between were left alone.  UGH.

I used a free toothbrush there at the "rinsing station"—gone are the days of water and suction and a bowl beside your chair—but it was too soft to do much.  I also asked for floss and toothpicks because the back side of my teeth were driving me crazy.  Sadly, because my doctor's staff asked me to come early—unbeknownst to her—I went from the orthodontist to Best Buy to drop off my old television to the pharmacy to Walmart (groceries) and then to my GP's office.  So, no time to get home to my disgusting-but-awesome toothpaste and my electric tooth brush and, most importantly, my dental pick.

I am hoping to use a coupon for an economical dental exam and cleaning as soon as possible so that I can have a professional finish off the job I started on cleaning up that plaque.  At least I finally got all the cement grit out from between my teeth.  That stuff flew everywhere.

I had to sign a release acknowledging that I understood that my teeth will move since I did not have another retainer put back in my mouth.  The price was $260 for that.  At first, I was going to ask my sister to loan me the money until I could pay her back and then I looked at using one of those balance transfer checks that came in the mail the other day.  But the fact is that I have to move from trying to figure out how to pay for things to not paying for them in the first place.

Recently my sister put it simply:  You cannot do what you cannot do.

We were talking about medical expenses and choosing amongst those, but I need to stop trying to make things work the way that I have.  I do not need straight teeth.  I just need teeth in my mouth.  Hopefully, they will not move much.  So, instead of spending that $260 that I didn't have, tying up more and more of my grocery money down the road (I am already almost impossibly tight until April making up for spending at the end of 2017), I spent $50 just to have the broken retainer removed.

This month, aside from my slimmed down grocery budget and all my other fixed expenses, I have $188 to spend on non-budgeted medical, household, gas, and pretty much anything non-utilitarian that I need.  Although I am at the end of the second week of my budget cycle, I actually have not spent any of that money.  So, I could pay that $50.  And I will need the $59 that I think I will need for that coupon-dental-service.  That will leave me $87 still to address my needs the second half of this month.

As much as I am peeved about breaking my retainer after three decades, this is the first victory of the Great Recovery Budget Plan for 2018.  I will be glad when April arrives, though.  SIGH.


P.S.  I broke it chowing down on a chunk of French Bread.

P.P.S  My tongue is still freaking out over the back of my lower teeth.  Long lost friends??

Distressing news...

Tonight I made apple caramel cookies for my therapist's office, salted caramel cookies for my GP's office, and peanut butter cookie brownies and butter vanilla sugar cookies for my freezer.  I had been planning to make the latter two for myself for several days, but the news I've had of late just has me despairing and the new medication I am trying for the constant shocking pain in my hands has side effects that have made life rather difficult in the physical department.

I had planned on making the cookies for my therapist's office this afternoon, but the news I received this morning crushed me.  And I spent the afternoon sitting on the sofa weeping my tearless sadness.

I finally got up the courage to ask my parents for help with my medical expenses.  In part I did so because they are no longer paying to have my house cleaned since the woman who was leading my team left the job and there is no one who has another space in her schedule.  In part I did so because I keep thinking about the money they are sending my sister for my nephew's schooling and I asked myself what made him more worthy of help than me.

The answer I received was no, buried in some talk about having medical expenses of their own and my stepfather's retirement.  The thing is ... they have been taking vacations all over the world, having recently gotten back from Argentina, following trips to Peru, Ireland, and Japan.  They are in the process of sending $100,000 to my sister for my nephew's schooling.  They regularly visit my nephews, taking them on trips for Spring Break and having adventure-filled trips in the summers with them.  They regularly visit other family members.  And they regularly visit friends and take small trips such as to a spa retreat.  In short, my parents are wealthy.  It isn't that they do not have money with which to help me with my medical expenses.  It is that they do not want to help me.

I received the news this morning and couldn't get back to sleep.  All I kept thinking about is the wording of the decline of my request, just how much they have helped my sister over the years, and all the ways that they spend money.  It's their money, though.  I have no right to it.  I suppose I had no right to ask.  But I did.  And I hoped.

I have a plan for 2018 to make up for just how much I went about celebrating my 50th birthday since I was going to be the only one really doing so.  I have a plan that is doable as opposed to so austere that I will fail to meet my monthly budget goals.  But I also have a body that is failing me in ways that are troubling.

A while back, I was looking at something in my chart and I saw that I was diagnosed as Stage 2 Chronic Kidney Disease.  Call me foolish, but that is the first time I absorbed just how troubling my kidneys are and I understood why my GP was so put out over the ibuprofen I took with the plantar fasciitis even though I gave up the Celebrex during that time.  I also realized my willingness to go from 400 mg of Celebrex a day to 300 mg wasn't all that impressive in her book.  She's trying to save my kidneys while balancing my need for arthritis pain relief and I wasn't getting it.

I got it now.

Learning that I have venous insufficiency in my legs wasn't that much of a surprise because my cardiologist was so very certain that was the cause of the swelling I experience.  That and blood pooling when my blood pressure drops and my heart rate cannot keep up with gravity.  But I admit that I am rather used to test results coming back normal.

So, I suppose ... I suppose I should have been prepared for the high resolution chest CT to come back normal, too.  It didn't.

I have patches of groundglass opacities in the upper and lower lobes of both lungs, more so in the lower ones.  The impression was either infection (my white cell count is just peachy) or interstitial lung disease (something that can happen with Sjögren's Syndrome if you are unfortunate).  The latter is just plain bad news.

Now, there is this part of me that jumped up and down to have something measurable wrong with me, but mostly I felt punched in the gut.  I had bought into my rheumatologist saying it was my heart and my cardiologist saying that it was the strain of being vertical that is par for the course with dysautonomia.  He didn't even think I should bother with the CT, buy my GP still wanted it done (as did I).  I knew that something was going on between the shortness of breath and the breathlessness.  I just didn't want that to be the answer.

It is not a good answer.

Then I went to see the eye specialist thinking I would get a good report and was sucker punched again with the news that the dryness in my corneas is no better and is a tad worse in some areas.  I am to try adding a fifth type of eye drop to my regimen and to increase dosing my eyes to every hour.  She said, ideally, I should be putting in those drops every 10 minutes, but that is not manageable.  The next step will be to cauterize my tear ducts to try and keep more moisture in my eyes.

I have been so very overwhelmed thinking about adding one (most likely two and possibly three) more specialists to my medical team and any medications they might add to my list or tests they might order.  There just isn't room in my budget.  The increase in Medicare ate up nearly all of the COLA adjustment that I got this year after having things static for the past few years.  Where will I get the money for more medical stuff?

I learned that I can save money on streaming if I pay two of them annually and so I did and set up savings accounts so that when I pay them next year, I won't take a hit from those bills.  I realized that even for the small amount of Christmas things that I do (cards and a few presents), I need to be saving all year for that, too.  Another automatic savings account.  And I switched insurance companies saving well over $100 per year, but I had to pay the car insurance up front.  A third autonomic savings account set up.

Laugh if you will at all of my savings accounts, but I cannot handle any big bill in a month.  I need them all saved for and funds set aside for when those bills come due.  And I cannot think of a way to keep all the funds separate—saving what for when—if I just dump the money all in one savings account.  Fortunately, Capital One has the same rate no matter how small your balance and no limit on deposit amounts or the number of accounts you can have.

I should say that I cannot handle more than one big bill in a month and right now that one big bill is Parkview, the medical system where nearly all my appointments, tests, labs, and x-rays take place.

I have 2018 mapped out budget wise and, thanks to my electronic register, can tell you how much money I should have on any given day of the year.  I also have weekly budget goals estimated through June, estimating specifically what will be on my credit card, so I can also tell you on what days of the month I will be spending money.  The only real luxury I have is streaming, spending $44 a month if you include the cost of Amazon Prime.  That and groceries is the only place I have flexibility.

I know I dipped into my tiny retirement fund for my haven.  But I honestly feel no guilt over that.  My daily life is quite miserable on many fronts and I built a place that makes me soothes and strengths me when I seek solace there.  Having that is crucial to surviving.

But I am determined to only dip into that meager retirement fund for medical if I have a hospitalization.  I want to make medical work on my small disability income.  I want to make all my bills work so that I am not taking from the future to fund the present.  In the best of all worlds, I would be saving even more for the future.

But there's my blasted body with crap kidneys and crap lungs and crap eyes and a crap autonomic nervous system and a crap immune system.  I'm assailed on many fronts and hardly know how to fight.

My sister asked a question the other day, wanting to know if the thousands I spend on medical is worth it since I have incurable disease and conditions.  She surprised me and I thought that was a good question as I could see how that question could be in the minds of my family members.

I am humbled by my new GP and feel as if all the things she has done medication wise are geared toward making some things in my life better.  Some of the pain is better.  It is still present, but muted somewhat.  I've added a slew of mediations this year, but all are ones that have a measurable impact, save for the one we are trying out now.  And none of my doctor's are into testing for testing's sake.  I think we've been extremely conservative in that front.  I think the only extra spending I am doing is that the cardiologist would go to thrice a year visits, but I want to stay with the quarterly ones.  That means an extra $45 a year there.

So, I could answer her in the affirmative.  And her question was good in that I want to make sure that I keep asking it as I move forward, especially with how Sjögren's is ravaging my body.  Because, basically, I do not believe that going into medical debt is a wise course of action unless there is some life-shattering event, such as a car accident that is out of your control.  I don't believe in seeing any doctor without being certain of paying his/her bill.  The same goes with testing, imaging, and labs.

How do I pay for all the medical?

Devastated at my parent's response, I reached out to my sister.  Mostly, she just kept me company all evening, chatting about this, that, and the other, none of which having anything to do with medical expenses and asking for help.  But she did ask me how I felt.  It was hard to answer her and something she had said is what I was thinking, too.  But after I said that I felt worthless and unloved, she said she hoped that I could get to a place, beyond the hurt I am feeling now, where I could see that my parent's response has nothing to do with my worth as a human being.  Normally, I want to scream:  GIVE ME TIME TO FEEL WHAT I FEEL.  But her saying that I am not worthless was helpful to hear.  Something I think would help to hear more often!

My parent's decision not to help me when they clearly could do so is not a reflection of who I am or what I am worth.  My sister's emphatic statement with those two points was a balm to my heart.  But I am still feeling what I am feeling.  I am still so hurt and still wonder why I am not worth such a small fraction of the help my sister is getting for my nephew.

But I suppose that hurt is sitting on a foundation of hurt that my family, aside from my sister, has not taken the time to learn of the things ravaging my body and making life so very, very hard for me.  I want them to care and to support me in this battle that I am forced to fight.  I want to not be the only one managing all the medications and weighing what to take or do medical and what to not pursue because of cost or return on investment.  I want the words dysautonomia and Sjögren's to be their words, along with all the words that fill life in both of those worlds.  Instead of "How are you doing?" I want to hear "How was your last doctor visit?" or "What is your testing showing these days?"  "Or how is your battle with PTSD going?" or "What are ways in which I can support you?"

I want a Team Myrtle and I want my family to be charter members.

My therapist and doctors keep asking about Team Myrtle.  I mention Becky's help with filling my medications and my friend Mary's reframing of troubling things from therapy and Amos' love and affection.  They sigh, saying that's not really a Team Myrtle.  I know that.  But I cannot make my family care.

SIGH.



On a separate note, before I forget, I want to say that this is the first year that I had a lot of Christmas cards.  My dear friends all sent ones and some of my family.  I was surprised and heartened and have savored looking at them up on the plate rail in my dining room.  I didn't realize that Christmas cards could be such a comfort.  I am deeply, deeply grateful for all of them.

The things you endure...

Crushing headaches.
Nausea.
Tingling lips.
Weight loss.
Drowsiness.
Jerking limbs.
Yawning.
Gagging.
Dry mouth.
Numbness.
I Don't Care.

Those are the symptoms I've been battling for 11 days now.  This new drug packs a wallop.  Friday, I will be doubling the dose up to the lowest therapeutic dose for neuropathic pain.  Then, it will be a couple of months before I know if it will make a difference with the pain in my hands.

61 days.
Shock. Schock. Schock. Shock. Schock. Schock. Shock. Schock. Schock. Shock. Schock. Schock.
Unceasing.

Frankly, after all the weight gain with the gabapentin, I do not mind the weight loss.  However, I am fairly certain that it might be labeled a bit of a concern.  I am not concerned because I have LOTS of weight to lose.

I also do not mind the drowsiness in that I am sleeping longer segments at night.  I very much dislike when I awake after just an hour or ninety minutes of sleep.  Sometimes, now I am sleeping three or four hours before waking and needing to fetch fresh ice packs.

However, the drowsiness in the late afternoon/early evening means that I HAVE to take a nap.  That's because the yawning causes me to gag.  Every. Single. Yawn.  It is very, very, very difficult to continually fight back vomiting with the constant yawning.  It is easier to just give up and sleep.

The rest ... I am just trying to endure.  The hardest is feeling so numb and not caring about anything.  It is difficult to think, to talk, to do.  So, I haven't done much.  And what I have done has not gone so well ... especially my Christmas treat packages.  SIGH.

The things you endure for even the merest hope of help with your pain.  In my opinion, chronic pain is impossible to understand unless you live with it.  And I do not wish such knowledge on anyone.

Symptoms and symptoms...

In the absence of data that an MRI could provide and on my 50th day of constant shocking in my hands, my GP decided to add duloxetine for pain management.  I have been of two minds about trying the SNRI drug.  It is an antidepressant, after all, and there is a stigma about taking those meds in the medical community ... yet another reason to be labeled a "head case."  But the pain in my hands ... being shocked constantly ... is driving me nuts.  I agree to try the medication.

It's been five days and I wouldn't think that it could be affecting me this strongly, but what I am feeling my therapist says is clearly the duloxetine.  I am numb and basically do not care about anything.  It is a weird, weird state to be in, at least it is to me.  I have lost a bit of weight because I have absolutely no interest in food.  Me!  Me!!  That alone is shocking.  Of course, though, I don't mind the weight loss after all the gabapentin weight gain.  I just ... I just don't like the me that I am right now.  I am hoping this passes.

As far as side effects, the nausea is different from what I usually experience.  A lot more vomiting.  I have crushing headaches.  I have random shocks in my body.  And my lips are tingling.  Fun times.

In reading about duloxetine's help with the neuropathy, I need the dose to be at least 60 mg.  My GP said that I could go up in two weeks, but I'd rather not pay for the medication twice in a month.  My therapist suggested that I take the full 30 days, too.  It is a toss-up between symptoms of side effects and symptoms of neuropathy.  SIGH.

I tell you, the combination of brain fog and IDON'TCARE is making life hard, especially trying to take all of my meds at all the time slots I have throughout the day.  I haven't done much since starting the medication.  Well, other than going to appointments.  I forgot about a prescription at Walmart that was only partially filled, but it seems Walmart also forgot about it.  So, I need to go fetch that.  I had planned to not go out until next Tuesday, but I suppose one trip will be fine.  I am just not up for driving whilst in this IDON'TCARE state.

My sister completely spoiled me for Christmas and her present arrived today.  Normally, I would have already had it put together so that I could photograph it for the world to see, but IDON'TCARE and I am cold.  I am so very cold this winter that I am contemplating throwing my budget out the window and turning the thermostat UP.  I already did that.  I went from 55 to 60 degrees.  But I am still so very, very cold.  Whenever my realtor comes, I turn up the thermostat for her, to 65 degrees, and I feel much better then.  I just don't know how much more that will make my heating bill each month.  However, I am not sure how much more cold I can take.  In any case, I am hoping to put together my gift on the morrow.

For now, I am trying to think about something my therapist asked me to consider:  not saying that I was bad, but that I was terrified.  I was telling her about what happened during the blood flow testing.  I was thinking about how I was not being a good patient and she asked me to explain that.  I said that  I was shaking and crying and pulling away from the tech's touch, making things harder.  But my therapist responded:  you were terrified and lost back in the past.  She said that I was brave for staying and that she was amazed that I made it through that.

I have been turning that over and over in my mind.  I wasn't bad; I was terrified and my responses were natural and understandable.

But then we talked about how I coped with all the disgust and fear that overwhelmed me afterward.  I cut.  It is so hard for me to think about that.  I hate how effective cutting is at coping.  But my therapist insisted that there is no shame in that.  There is no shame in trying to keep myself safe in a way that is less destructive than drinking or drugs and less permanent such as suicide.

I cut and it is as if I am cutting through the maelstrom of emotions, stilling them.  The pain brings all my focus away from what is tossing me about, leaving me desperate for escape.  Then, the wound serves as a ... tool ... for days and days afterwards.  If I become overwhelmed again, I can just press on it and let the pain calm me again.  My therapist said that must be comforting to me.  I do not think that I have ever given thought to that, but it is.  I do not cut all the time and work hard not to, but I as much as I loathe that I have done so I welcome the help when I have a wound on my thigh.  SIGH.

I talked with my GP about it and she asked me to show her.  It took me a while to do so, but I did.  I was surprised at how ... non-plussed she was.  She asked if we could talk about it another time.  I agreed to that because I am trying not to be so ashamed.  That's why my therapist's comments were such a relief, how adamant she was that there was no shame in cutting.  And that she absolutely believes that one day I won't need that Big Gun coping mechanism.

It was a weird, weird conversation to have being so numb and in such a state of IDON'TCARE.  But I suppose she is used to someone trying to acclimate to an antidepressant.  I asked her what happens to someone who takes an antidepressant who isn't depressed.  I've never been diagnosed as such and she doesn't believe that I am.  She said she didn't know.  I do worry about that, especially with the IDON'TCARE permeating my every existence.  But I would really, really, really like an end to the shocking in my hands.

I do welcome the numbness, just now, and the weight loss, for sure.  But to have no interest at all in food?  Cooking has been the only thing that was moving forward in my life, the only area where I have been able to learn and to progress.  And, my goodness, with all the nausea I battle each day, I need my interest in tasty food returned!!

So which symptoms do I choose????

Wretchedness...

Yesterday, I woke early to a phone call canceling my MRIs scheduled for the 20th.  I have been so very worried about having my pacemaker turned off for them that a part of me was instantly relieved.  That is, I was so until I learned why my appointment was canceled:  my pacemaker is not rated for MRIs.

When I was learning about the model I was getting, I specifically asked about MRIs because I have them regularly. Well, I had them regularly until I started avoiding them a few years ago.  Avoiding neurologists, rather.  I asked several times in my nervousness.  And yet somehow my leads can be in an MRI, but my pacemaker itself cannot.

I am overwhelmed.

Trying to wrap my mind around this news—news that basically means that I have to have pacemaker surgery again if I want to have an MRI—I went to my blood flow study.  I was told it was an ultrasound.  I assumed that it was something akin to the last blood flow study that I had.  When I arrived, I asked to speak to someone from the pacemaker clinic, because I was absolutely certain the news that I had received was wrong.  Long story short, it was not.

Reeling, the tech told me that I would have to be unclothed, in a gown, would involved my groin and pelvic region, and would take two hours.  I started melting down.

My choice was to leave or to stay.
Leave and not have the data my cardiologist wanted.
Stay and have my PTSD triggered.  Something fierce.

I chose to stay.
I am still triggered.

Afterwards, I thought to cheer myself by getting a Christmas tree.  Only the JERK who did the fresh cut keep cutting and cutting and cutting.  I tried to stop him, but he ignored me.  Rather rudely.  You  know, my being a female and all.  I paid for the tree and brought it home and had an asthma attack carrying it inside.  All before I realized that the bottom of the tree was now so short it would not fit in my stand or pretty much any stand without pruning off quite a bit of the tree.  And, in the process of realizing this, my not-yet-two-year-old-metal-stand broke!

I thought about just ... well ... I decided to go back to Mendard's and ask for a refund.  This was, in part, because Taco Bell put onions on my no-onion bean burrito.  That has happened so frequently I stopped ordering my beloved bean burrito, an order I've been making for three and a half decades, but I just wanted one.  Only, I forgot to open it up in the drive-thru lane to see if there were onions.

I did receive a refund and thought about leaving.  My sister was on the phone and suggested I leave, if that was what I wanted.  She suggested that I just skip Christmas, with all that has been going on with me.  I thought about that.  But I do want a tree.  Although ... I'd like to decorate it the way I wanted, not with all the decorations I've been gifted.   I voiced that thought, since I will be alone this Christmas, and my sister encouraged me to just go look at trees ... and stands.

I choose a tree that was all wrapped up, not knowing what it looked like, because I knew I could easily get it in my car and I could get it into my house by myself with the bear hug method.  It is not exactly a Christmas tree shape, kind of skinny and leaning quite a bit, but it is my tree.  When I got fetched the stand from the attic, I grabbed the box with the tree skirt and the lights.

I thought I would like to decorate the tree with just my glass ornaments and the half-dozen from my childhood, but it is awfully difficult going up and down two sets of stairs.  I think I might just leave the tree as it is.  After all, there won't be any presents underneath it.  And it will be just me looking at it.  It look okay like this, eh?

Today, aside from wrapping the lights around the tree now that the branches have dropped down from being all wrapped up, I finished the frame for the stained glass window that I bought for my haven last March.  [Firewood Man never got a chance to make the frame, so I finally got him to bring me back the window and loan me his miter saw.]  The good news is that I finished.  The bad news is that I broke the second pane of glass again.  That's $28 down the drain!  ARGH.

I decided to just leave the back side open.  What I can do is caulk the top and sides of the frame once it is hung to keep the elements away from the back side of the window.  But I am hanging it on the side of the garage with a roof overhang.  It should be fairly protected.

Overall, I would give myself a C+ on this project.  Clearly my wood skills leave much to be desired.  My only final worry is that the frame will split when it is hung, since I plan to screw it directly into the garage wall.  I have to have help with this part, so maybe the other person (I am assuming/hoping Firewood Man can help) will be so skilled with drilling and screwing that the frame will be fine.  I would like it hung as soon as possible, even knowing that I won't be able to fill the screw holes and paint them until next spring.  I just want to be able to see how my vision for my haven turns out.

I will admit that it took me well over an hour to figure out how to use the glazing points to hold in the window and the pane of glass I have in front of the window.  The way I kept trying to put them in was with the bent pieces parallel to the frame pointing down, as if they were to slip between the glass and the frame.  What you do is have those bits pointing upwards, so you can use them to tap the pointy bit in until those bent prongs rest up against the frame.  It was ever so much easier to put them in when the glazing points are in the right direction and orientation!  SIGH

With the frame completed, I tortured myself on the recumbent bike, showered, and built a fire.  I spent the entire evening clutching Amos and roasting myself before the fire.

I am still overwhelmed.
I am still triggered.
I am still weary of the wretchedness of this life of mine.

Start and stop...

Wanting to DO SOMETHING yet again, I got everything ready to continue working on the frame for the stained glass window.  From the garage, I fetched the two glass panes, the stained glass window, the under frame, and the staple gun.  From the basement, I fetched my drop cloth, pliers, primer, paint, stir sticks, paint triangles, paint brushes, liquid nails, and the doohickey you use to apply sealant or construction adhesive.  It was a lot of work to get everything set up.

I needed to adjust the inner frame, so I pulled out all the staples on the two left side corners and repositioned that piece.  Then, I stapled it back into place, and I added staples to both sides of all four corners.  Finally, I added staples to the back side of all four corners of the outer frame.

After checking and double checking that I could move the glass and the stained glass window in and out of the inner frame, I went to glue the two frame pieces together.  Sadly, the liquid nails had hardened.  It was too old.  And I had broken the 6th rule of construction projects:  Wait until the project is done before making your returns.  I bought a new tube of liquid nails, found a tube in my basement, and then returned the new one when I bought the second glass pane.

The pane of glass that I broke today.
SIGH.

I wanted to SCREAM.  There was no way that I was going to go out and fetch more liquid nails because I went to therapy today.  I have a test on the veins in my legs tomorrow.  And I have another doctor's appointment on Friday.  I can possibly stop by Lowe's tomorrow.  Tonight, I just have to wait.  Be patient.  I stink at that when I want to DO SOMETHING.

Since the balmy weather finally fled tonight, I decided to have a fire and concentrate on not castigating myself for breaking the pane of glass ... for wasting $14.  I am really, really, really tempted to not have a pane of glass in the back, but I do still think that having the stained glass window sandwiched between two panes of glass and sealed with clear caulk  (ah! ... doohickey = caulk gun) is the best way to protect the stained glass window outside.  So, I will be buying liquid nails and yet another pane of glass.  SIGH.

It was rather frustrating to start working and to find myself abruptly stopping.  It is not that I want to finish the project NOW, because I am not going to be able to install it without help (translate that:  without Firewood Man's drill).  But I did want to make progress.  I was hoping to get the priming done and one coat of paint.  But I do not wish to prime until the two pieces are glued together.  Or paint.  Mostly, this is because I need to be sure that gluing the pieces together doesn't make the window no longer fit into the inner frame.  Maybe that is a ridiculous worry, but it is my worry.

The fire?  Well, that was just lovely!  Firewood Man was not able to bring more wood for a couple of weeks and then we had this crazy insane balmy weather.  But tonight we had bitter cold weather due to the wild winds that started yesterday.  So, I was able to roast myself before the fireplace.

Here's a tip for you:  Don't roast your feet before a fire if you are wearing Birkenstocks.  The soles will come unglued from the heat!  Yep, my feet are so cold from Reynaud's that the heat can be intense enough to melt shoe glue and yet not even feel warm to my icy skin!!

I'm colder this winter already, but I do not know why ... unless really you blame my wonky nerves and the autonomic process that keeps you warm.  Last year, I kept the house at 55 degrees.  This year, I had to up it to 60 degrees.  And at that I am still very, very, very cold.  When my realtor comes over, I bump up the heat to 65 and only then find the temperature bearable.  However, I cannot afford keeping the house balmy this winter.  Or any winter for that matter.  But especially this winter.

Despite the cardiologist's certainty that I have venous insufficiency, I am expecting the test results to be normal tomorrow.  I still think that whatever's going on has to do with my heart.  Of course I am probably wrong, given that he is very good at his job.  But I've finally got back to walking on the treadmill and the thing that I keep seeing is that I have breathing problems when my heart rate tops about the 130s.  On the recumbent bike, I just cannot get my heart rate up high enough.  However, it isn't just standing because I can walk at a lower pace and keep my heart rate around 120 and my oxygen sats drop to 91-92, but no lower.  Once I get over 130, my sats start dropping lower and lower and breathing gets harder and harder.  Something is happening.

Of course, to be fair, I will admit that I do not hold out hope that the high resolution CT scan will give any answers either.  Mostly, I think this because, with dysautonomia, normal test results are the norm.  That's why my bum kidney blood work was so surprising to me.  I am not looking forward to the next blood test even though I've gone down—again—on the amount of Celebrex that I take.

No, I cannot think of why my overall heart rate rose in September/October, but the higher it was, the worse the breathing got with any exertion.  High is not good for me.  Why? I cannot think why sometimes my legs go from being swollen to be alarmingly doughy.  But its randomness speaks more to dysautonomia rather than the valves in my veins.

But I will use the opportunity to practice medical optimism during the testing.  Smile and nod and look hopeful!  Hah!!  SIGH.

Yep.  I'll definitely be fetching the liquid nails and glass pane on the morrow.  That way, after the testing, I can distract myself by DOING SOMETHING.  From the testing and from the comprehensive physical exam I'm having on Friday.

Eight days...

I keep trying to write, only to find myself with nothing to say.  Or nothing worth speaking.

It's been a long, long week (or rather eight days), with a few bright spots.  One was getting my replacement refrigerator.  It arrived on Thursday, which made for a long, long day.  I had to empty mine and then re-fill the new one.  The good news is that the new one is much, much better than mine.  Small things, really, that add up to a BIG difference.

For one, there is an extra cubic foot in both the refrigerator and the freezer.  In the freezer, it almost feels as if there is two or even three.  Mostly, this is because of the second bin in the freezer.  Storing things in a bin, things that cannot be stacked easily on a shelf, multiplies space.  Also, the three bins in the freezer door are much deeper and have more space than I can think of how to use.

On the refrigerator side, the best news is that the light box that was at the front of the top of the refrigerator, blocking access to the top shelf is gone.  The light is now in the back corner.  And the top shelf is ginormous.  Every time I look at it, I am amazed anew at just how much space there is and that I never, ever have to tilt my jug of milk in order to put in on the shelf again!  Like the freezer, I have extra space in the refrigerator door bins.  Two are only half full.  Shocking, eh?

The less than good  news is that the two extra shelves in the freezer that I need to manage all my ice packs did not fit in the newer model.  I was able to take them from my original new refrigerator from five years ago and put them into the new refrigerator I bought a year ago.  But I am not able to put them into this one.  They are too narrow.  So, I had to spend far, far, far too much money replacing those.  You see, the side-by-side models only come with three shelves, thinking that you would want a space large enough for a frozen pizza on its side.  Well, yes, maybe, if you didn't have a neurological disorder that made ice packs one of your most prized and needful possessions.  SIGH.

Most of the last week was spent being ill or resting or avoiding my thoughts.

Firewood Man did finally bring me a load of firewood and he did the final mow of the year.  This meant that he also tended to all my leaves.  Well, except for the leaves from the ornamental pear tree out front.  Those are still on the tree!  This was the first year I didn't have to do the raking and bagging and I am deeply relieved and thankful.

I was able to prune the burning bushes for the year.  If I do not, they start growing up over the windows that are above the built-ins in the dining room!  Pruning is not so bad, but cleaning up is rather hard on me.  Too much bending over and getting up from a squat.  I also pruned the weeping cherry as best I could in case I am not able to get it removed.  It is still massive, despite having pruned enough for an entire yard waste bag.

I also worked on refilling my larder, which was getting a bit low.  I now have 10 different options in my freezer for meals and one dessert option.  I have been a bit lax on refilling those containers.  I would like to try a new recipe or two, but it was good to do a bit of cooking.

Finally, I started work on building a frame for the stained glass window I bought for my haven last spring.  Firewood Man hasn't had time to do so.  I spent a long time thinking about what I could make and asked to borrow his miter saw.  I have much of it done, but have not had the energy to pick the project back up.  I still need to work on the inner frame, how the window will be held in place. Then priming and painting.  But I have the outer frame done and ready to paint.  When it is all done, I will still need help installing it.

So, some productivity and some cooking and a lot of just ... being.

I've mentioned before that I wondered why the authors of my favorite dysautonomia blog stopped writing.  I get it.  Life becomes too overwhelming.  And there are no words sufficient to speak such a life.

Since I started therapy (for the umpteenth time) last April, all I have been doing is be overwhelmed.  I keep thinking that I am wasting her time because we just ... I just ... well, I spill out how I've been overwhelmed the intervening week and we never get around to ... the hard stuff. 

All I do these days is manage.  I manage pain and manage medications and manage symptoms and manage ... well, manage and endure.  For I was going to say that I manage my fear.  But I am not managing that.  Would that I were.  SIGH.